Thanks so much for all of your well wishes and concern.

I too thought about meningitis, but there is no fever, unusually severe headache or nausea, so I think that it is just spasticity and inflammation. Will mention it to the neuro when I talk with him later today though.

Things have been improving slowly so I'm just resting, being kind to the body and letting time and the body do their thing.

As they say, patience is a virtue...so reminding myself on the importance of being that sort of virtuous when the 'story lines' and crankiness arise .

Much love, Erika

Good job of taking care of yourself, Ericka...hope the sxs fade away and you feel better soon

Yes, I very happy to say that things are surely feeling better gradually, but I'm taking no chances... so will be laying low for the next few days.
This last go round has put a bit of a scare into me.

Hope that everyone is doing well and am looking forward to catching up, but the vision is not quite right and am avoiding as much strain as possible.

With love, Erika

With the amantadine out of my system and with things feeling better, I tried the Lyrica for pain. Also a no go for this body I'm afraid. After 3 doses of the stuff my fingers and toes were like little sausages and muscle pain had increased rather than decreased. Also had increased dizziness and blurred vision so I've scratched that med off the list of possibilities as well.

I'll have another consult with the MS neuro on the 20th of this month so until then, I'm going to stick with meditation, stretching, Baclofen for spasticity and Ibuprofen for the pain and inflammation...and time off from work. Although my guts don't like the Ibuprofen it is far easier to deal with those side effect symptoms than with those created by the Lyrica.

It is frustrating to be back where I started; as I am still dealing with pain, spasticity and narcoleptic-type fatigue (almost face planted into my bowl of soup yesterday), but it is sure better than what I was experiencing while on these drugs.

"Feeling better" is relative...the devil that you know is better than the one that you don't .

With love, Erika

Erika, amazingly I had pretty much the same symptoms when taking Amantadine. But by the time I took it, I had reacted to lots of drugs. And so was not surprised, and quit after a few days. Later, I thought that my reaction was because I have Porphyria (after I found out what Porph was and was ultimately diagnosed with it). I was very spastic, shaky, had eye trouble.
I also reacted severely to one Lyrica pill, given when recovering from Shingles, which are indeed as painful as childbirth--amazing! I was still on a walker, as my Shingles had been from hip to toe on the left. I felt I could not breathe well on Shingles; it felt like the partial bulbar paralysis I'd had many years before, when I was not dx'd with anything. It did stop the pain dead in its tracks but was threatening to stop ME.

Right now I'm depressed about my sensitivities because I even more alone, as I can't go to church (where most social life is) due to the toxins added to the office and the carpet.
They could have used steam clean on the carpet but wouldn't waste the pennies extra, so I can say they wouldn't waste even pennies on me, and I will not go back, as this has happened 3 times in the years I've been going there. Sensitivities are life changing.

Aw Mariel,

You are so right about the sensitivity thing. Thankfully, mine seems limited to medications mostly. Chemicals in carpets and buildings, air pollution and things like that don't bother me any more than anyone else, thankfully.

How sad that the church went with a toxic substance to clean the carpets, when there was an alternative.

Maybe you could start a small prayer or Bible study group at your house, where you have control of the environment?

My step mom does something like that with 5 other ladies. They go to each others' houses on a weekly basis, socialize a bit, do Bible study and pray together.

With love, Erika

Erika, I'm going to another church, where there is no rug and no spray. I may be able to attend a group there to make some acquaintances. So over the worst part of that. It's not the first time. It's been my life, fleeing triggers. I am grateful there is some place I can go to church which IS OK. But I remember a life lived as a fugitive.

My MS neuro was supposed to send in a script for Provigil, as well as something else for pain to my pharmacy last Thursday but didn't and also didn't on Friday.
I know that he's super busy and that I'm just one of his many patients, but I was really hoping that he'd come through.

The narcoleptic fatigue thing is still going on, as is the neuropathic pain...and I'd like to get back to work. Month end is coming for the clinic/office, which needs my attention, so I've started in on it this weekend because it takes me so much longer to do when I am having symptoms like this. Talk about moving slow. Its been like pulling teeth this time around.

What do you folks with neuropathy take for pain?

With love, Erika

Well I managed to get my month end stuff done, but what usually takes me a day or so, took 3 days because I had to recheck everything, do some of it over, and the errands kept getting put off because the body was either not up to going out or driving. Eventually a friend helped me to do them by driving me around and doing some of it herself.

If things don't improve, I'll be hiring an assistant because although my friend has offered to help anytime, it appears that this may become a permanent issue, and I just can't ask her to do business stuff on a regular basis.
She is a friend and already has done so much...but there comes a point when one has to admit that a more permanent solution must be found.

I'm at that point now because this past month there have been too many times that I needed help or just didn't get things done because of Sxs interfering with plans, yet I still cling to the hope that this is not the beginning of my becoming permanently disabled.
I'm just not mentally ready for that .

I made an appointment to see my PCP today, as I haven't heard from or been able to get hold of my MS neuro, and I simply have to do something about the sleep attacks and the pain. Both have gotten worse this past week and I've also lost another 5 pounds over the last couple of weeks.

I'm eating enough and calorie consumption has not changed; and most food is taken in blended form because the digestion is still affected by the autonomic neuropathy. I'm thinking that the pain and decrease in physical exercise because of it, is the reason for the weight loss. I've lost some of the muscle bulk in my legs and the torso now looks like a skeleton with skin on it.

I haven't weighed 110 lbs since I was galloping race horses at the track when I was in my 20s...and that was over 30 years ago. The body was fit back then, now it is just skinny and getting progressively weaker.

Willy the dog got confused the other night and came at me snarling while I was gimping down the hall in the dark on my way back from the bathroom. He thought that I was an intruder because he hasn't gotten used to me sometimes dragging a leg yet.
Poor guy, he was totally embarrassed and needed some reassuring snuggle time in my bed along with some treats to get over it.

Come on PCP...pull something impressive and effective out of your little black bag today. Both Willy and I really need your help now, more than ever.

With love, Erika

sending good thoughts your way……...